UK National Kidney Federation - Surveys Zone - Tell the NKF

Tell the NKF (surveys)

If you are a renal patient (Pre-Dialysis, Dialysis or Transplanted) then the NKF would like you to complete this survey – anonymously.

When the results have been analysed the NKF will share its conclusions with one or more industry partners involved in renal care. We may also use the results with the media and for discussion at scientific meetings and conferences if interesting results are found.

Please phone the NKF Helpline (number at the foot of this page) should this survey give rise to any concern.

This survey is confidential – you do not have to identify yourself.

There is no closing date for this survey.

Thank you – NKF.

Please skip past questions you would prefer not to answer.

1. Are you male or female?

Male

Female

2. Please give your age:

0-12

13-18

19-40

41-60

61-80

80 or over

3. Which kind of patient are you?

a patient preparing for Dialysis

a patient on dialysis

a patient with a Transplant

a patient on Dialysis following a Transplant

If you marked a patient preparing for Dialysis or a patient with a Transplant please go to question 6.

4. Are you Dialysing:

at Home

at Hospital

5. Which type of Dialysis are you on:

Peritoneal

Haemodialysis

6. Have you been told you have anaemia by a nurse or a doctor?

Yes

No

If you marked No please go to question 8.

7. Were you told you had anaemia:

Whilst I was preparing for Dialysis

Whilst I was on Dialysis

Following my Transplant

Whilst I was on Dialysis following a Transplant

8. Do you know your haemoglobin (HB) level?

Yes

No

9. Are you taking or have you ever been given Recombinant Human Erythropoitin or Novel Erythropoiesis stimulating protein? (commonly known as EPO in any of its many available forms) Now referred to as EPO in this survey:

Yes

No

If you marked Yes please go to question 11.

10. If you answered “No” and you know your current hb level, please provide it here:

Below 9g/dL

9-9.9 g/dL

10-10.9 g/dL

11-11.9 g/dL

12-12.9 g/dL

13 g/dL and above

Please go to question 55.

11. Did you need to request EPO or was it offered to you?

I requested EPO

EPO was offered to me

12. Have you ever requested EPO and had the request refused?

Yes

No

13. How was your EPO administered?

Intravenous (IV) – into a vein or via a drip

Subcutaneous (SC) – injected under the skin

By tablet

Another method

14. What was the name of the EPO you were prescribed?

EPO alpha

EPO beta

NESP

Bio-Similar

Other

I don’t know

15. Who administered the EPO dose?

I administered it myself

My carer administered it

A Nurse administered it

A Doctor administered it

16. Was your EPO administered at Home or at Hospital?

At Home

At Hospital

17. Have you ever received Iron supplements for anaemia?

Yes

No

If you marked No please go to question 22.

18. How was the Iron given?

I took a tablet

I was given an injection

I was given intravenous iron

19. Was you Iron given on its own or in conjunction with EPO?

On its own

With EPO

20. Who administered the Iron dose?

I administered the Iron myself

My carer administered the Iron

A Nurse administered the Iron

A Doctor administered the Iron

21. Was your Iron administered at home or in Hospital?

It was administered at Home

It was administered in Hospital

22. What was your Hb level when you started taking EPO?

Below 9g/dL

9-9.9 g/dL

10-10.9 g/dL

11-11.9 g/dL

12-12.9 g/dL

13g/dL and above

I don’t know

23. What is your Hb level now?

Below 9g/dL

9-9.9 g/dL

10-10.9 g/dL

11-11.9 g/dL

12-12.9 g/dL

13g/dL and above

I don’t know

24. If you are aware of what your Hb level should be, please indicate it below:

Below 9g/dL

9-9.9 g/dL

10-10.9 g/dL

11-11.9 g/dL

12-12.9 g/dL

13g/dL and above

I don’t know

25. How has your treatment of anaemia affected your blood pressure?

My Blood Pressure has fallen

My Blood Pressure has risen

My Blood Pressure has become stable

My Blood Pressure has gone up and down

Stayed the same

I don’t know

26. Are you being treated for your Blood Pressure?

Yes

No

If you marked No please go to question 28.

27. How is your blood pressure being treated?

By taking tablets

By following advice (More Exercise/Less Exercise etc)

28. Have you ever been told that you have protein in your urine?

Yes

No

BEFORE you started taking EPO did you experience any of the following?

29. Tiredness:

Not at all bothered

Somewhat bothered

Moderately bothered

Very Much bothered

Extremely bothered

30. Weakness:

Not at all bothered

Somewhat bothered

Moderately bothered

Very Much bothered

Extremely bothered

31. Shortness of Breath:

Not at all bothered

Somewhat bothered

Moderately bothered

Very Much bothered

Extremely bothered

32. Pale Skin Tone:

Not at all bothered

Somewhat bothered

Moderately bothered

Very Much bothered

Extremely bothered

33. Palpitations:

Not at all bothered

Somewhat bothered

Moderately bothered

Very Much bothered

Extremely bothered

34. Headaches:

Not at all bothered

Somewhat bothered

Moderately bothered

Very Much bothered

Extremely bothered

35. Sexual Problems:

Not at all bothered

Somewhat bothered

Moderately bothered

Very Much bothered

Extremely bothered

36. Sleep Disturbance:

Not at all bothered

Somewhat bothered

Moderately bothered

Very Much bothered

Extremely bothered

AFTER taking EPO, did you experience improvements in any of the following?

37. Tiredness:

No improvement

Somewhat improved

Moderately improved

Very Much improved

Extremely improved

38. Weakness:

No improvement

Somewhat improved

Moderately improved

Very Much improved

Extremely improved

39. Shortness of Breath:

No improvement

Somewhat improved

Moderately improved

Very Much improved

Extremely improved

40. Pale Skin Tone:

No improvement

Somewhat improved

Moderately improved

Very Much improved

Extremely improved

41. Palpitations:

No improvement

Somewhat improved

Moderately improved

Very Much improved

Extremely improved

42. Headaches:

No improvement

Somewhat improved

Moderately improved

Very Much improved

Extremely improved

43. Sexual Problems:

No improvement

Somewhat improved

Moderately improved

Very Much improved

Extremely improved

44. Sleep Disturbance:

No improvement

Somewhat improved

Moderately improved

Very Much improved

Extremely improved

BEFORE you started taking EPO what would your feelings have been on the following statements?

45. I find it easy to get out of bed:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

46. I find it easy to climb stairs:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

47. I find it easy to take a Bath:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

48. I can attend a 9am-5pm job:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

49. I can exercise regularly:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

AFTER treatment with EPO what are your feelings on the following statements?

50. I find it easy to get out of bed:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

51. I find it easy to climb stairs:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

52. I find it easy to take a Bath:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

53. I can attend a 9am-5pm job:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

54. I can exercise regularly:

Strongly Disagree

Disagree

Neither Agree nor Disagree

Agree

Strongly Agree

Don’t forget that you can always telephone the NKF HELPLINE (number below) to relate any other experiences concerning Anaemia that would assist NKF knowledge on this subject.

To be Completed by Every Respondent:

55. Are you a resident of the United Kingdom?	Yes No

If you marked No please go to question 57

56. Geographical region:

57. E-mail address:	(to be used for verification purposes only. This will not be passed to any third party.)

If you wish, print out this Survey for your own records – then PRESS “Send Answers”.

Thank you for taking the time to complete this survey – when you are ready press the “Send Answers” button below. If you do not press “Send Answers” then your answers will not reach the NKF.

Thank you for taking part in this survey.

The original construction of this survey zone was supported by a grant from AMGEN – thank you.

Ongoing use, and content of the zone remains under the sole control of the NKF.

new NKF logo The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511.

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Page created: 16 October 2008

Last updated: 27 February 2011